Today marks the beginning Motor Neurone Disease Awareness Week, a week of campaigning to draw attention to the effects of this terrible illness and to highlight available support.
Motor Neurone Disease (MND) is the name given to a related group of diseases that affect the nerves which carry messages from the brain to the muscles. The disease is degenerative, progressive and incurable.
Yesterday, in a powerful and moving article, Gordon Aikman, the Director of Research for Better Together, described his own recent diagnosis, the impact this has had on his life and his determination to campaign to support research and improved services for MND.
He highlighted cases where MND patients have to pay for some of the essential care they need and spoke of the fact that 80% of funding for the country’s seven specialist nurses comes from charitable donations.
I’ve known Gordon for a number of years, from his previous role as a researcher for the Labour Group in Parliament and I greatly admire the way he has met his diagnosis head on. Ever the campaigner, he has set up a JustGiving page to support the work of MND Scotland. Incredibly, in just one day, his story has inspired people to donate over £20,000 to the charity.
MND Scotland is a charity dedicated to people living with Motor Neurone Disease, their family, friends and carers. The charity’s website is an invaluable resource and is home to a huge library of information and support materials covering all aspects of the disease and the impacts it has on people’s lives.
As we enter MND Awareness Week, the accounts of people like Gordon remind us of how much we still have to learn about the disease. In light of this, his fundraising efforts are all the more important as they will help fund the research that will hopefully, eventually lead to a cure.